Giving permission–the final gift

As November is coming to an end, so is Hospice and Palliative Care month along with Caregiver month. I have another topic that I want to touch on. Giving permission. That may seem like something simple, but in reality is something that we don’t do nearly enough.

Many of you have probably heard it said that you need to give your loved ones permission to die. It is absolutely true. I have had numerous patients clinging to life by a thread. Until they were given permission by everybody close to them, they would not pass on. A lot of people also will wait for someone. Sometimes they are waiting on a child to come home, which was the case with my Grandfather. When his last son came home and said goodbye, he passed away the next morning.

One of my ICU patients could have passed at any moment. He was unresponsive and I had told him numerous times throughout my shift that it was okay to go. However his family was all standing at the foot of his bed and hadn’t said a word to him. After telling them the importance of saying goodbye and giving permission, each one of them went to the head of the bed. One at a time they held his hand, gave him a kiss, said their goodbyes and most important GAVE PERMISSION. They said that they would be okay once he was gone. They still would love him with all of their hearts’.

Within sixty seconds, I noticed a change on the monitor. He was starting to have pauses between heartbeats. Short ones at first and then longer. At the two-minute mark…nothing. He had passed away. He had been given the permission that he needed. That was one of the most poignant deaths that I have seen.

Most recently, actually last week, I was able to see a very good friend of mine. She had ovarian cancer and was terminal. I knew it would be my only chance to see her before she passed. Each time we had talked over the last few months, I could tell that she was progressing. She was also a nurse–actually became one because of my Grandmother. When I called her last week, my heart sunk when I heard her voice. I knew she wasn’t going to make it much longer.

As she was sitting in her chair talking to family and friends, she never let go of my hand. When everyone had left, we were able to talk candidly. I asked if she had considered hospice yet, she replied she had thought about it, but nobody had brought it up. My gut was telling me that she had days. We talked about that it was a hard decision to stay and that is was an equally hard decision to go. Quality of life was a priority. We talked about that she would have a wealth of people waiting for her on the other side, including my Mother. I told her to give my Mom a hug and say hi when she got up there and that I would see her again soon enough.

With tears in my eyes when I gave her a final hug and said goodbye, there was a peacefulness that washed over her. It wasn’t there when I showed up. I had given her permission and brought up something that nobody else had. I wasn’t doing it because I’m a nurse, I did it because I was her friend. We spoke on the phone Saturday night and she said that she was trying to figure out if it was worth trying to keep fighting. I told her that I loved her and also said that I thought it was time for her to let go…she died the next night.

The power of permission is beyond measure. It is beyond anything that medicine can do. It is something that we all need to remember and not be afraid of. It is empowering to those we give it to.

To some death seems like a cut and dry process. To anyone that has been involved with patients, parents, family members or friends, we know that this process is so complex and emotional for everyone involved.

There is a stigma that seems to hang around death. It seems that once the funeral is over, then suddenly society expects that grief should also end. That is most definitely not the case. Grief continues for years. It changes form, it lessens, but I don’t know if it ever truly ceases. We learn to incorporate it into our lives. But, it is always brought back to the surface with the holiday season, birthdays, anniversaries and a litany of other dates that bring back treasured memories. That is how we cope. It means that we truly love someone and they will always live in our heart. It’s okay to grieve, just as it is okay to give permission.

You will lose someone you can’t live without, and your heart will be badly broken, and the bad news is that you never completely get over the loss of your beloved. But this is also the good news. They live forever in your broken heart that doesn’t seal back up. And you come through. It’s like having a broken leg that never heals perfectly—that still hurts when the weather gets cold, but you learn to dance with the limp. –Anne Lamott



Caring For Life: The Art & Essentials

November is National Hospice and Palliative Care month, as well as Caregiver month. Caregivers and family are heavily involved in the health of their loved ones. So many times they are the driving force behind getting Hospice and Palliative care involved. So it works out perfect that both of these happen to be in the same month.

A little background first. As a Registered Nurse, I had heard the first and last breaths of life as well as the first and last heartbeats and everything in between. A life is equally precious no matter how young or old. Everyone will ultimately transition from this earth, some sooner than others.

If you are reading this, then here is the first rule for anybody. It doesn’t matter how old or young you are. Make sure that your wishes for a major medical event and/or end of life care are clear. Telling someone is not sufficient, it needs to be done so that it is a legal document. There are several different options and the terminology can get a little confusing. So here are the nitty-gritty details.

A “Durable Power of Attorney for Healthcare” allows you to name a person to oversee your medical care and make healthcare decisions for you in the event you are unable. This person may be referred to by several different terms including healthcare proxy or healthcare agent. When arranging your care, the person that is designated is legally bound to carry out your wishes to the extent that they know about them.

To further make your wishes clear, you can use a second type of directive as well. A “Living Will” will have your written wishes for your agent and health care providers.

Many states have combined a Durable Power of Attorney for Healthcare and Living Will into an “Advance Healthcare Directive.” One of the best documents that I’ve had experience with is Five Wishes. This is a very comprehensive Advance Directive.

Personally, this is the Advance Directive that I had my Mother fill out. I was named her healthcare proxy and it was very detailed with how she wanted to be cared for in a multitude of circumstances. It also guided me through what her final wishes were when I ultimately had to withdraw life support. We had discussed everything very candidly beforehand so there weren’t any surprises.

With my chronic illnesses, I have an Advance Directive on file at all medical facilities that I’m cared for. I also have my Five Wishes filled out and have three different proxies named. This is in the event that your primary or secondary proxies are unavailable. You always have someone available to make decisions for you.

Even if you don’t have medical conditions, it is always essential to think ahead for what circumstances could possibly arise down the road. Encourage family members to have some sort of document drawn up. Just because you have an Advance Directive, doesn’t mean that somebody can automatically dictate your care. This only goes into effect in the event that you are unable to make decisions for yourself. You also have the right to change your wishes at any point in time.

With the Holiday Season coming upon us, it is time to have some conversations with family members. What a better time to discuss one of the times in life when everyone will need the most care. Work on creating everyone’s wishes. That is one of the best gifts that we can give to anybody. Dignity and respect.




Disease, Healthcare

Putting the “chronic” in illness

I have two definitions for all of you to consider.

Acute illness: any illness characterized by signs and symptoms of rapid onset and short duration. It may be severe and impair normal functioning.

Chronic condition: persistent or otherwise long-lasting in its effects or a disease that comes with time. The term chronic is often applied if the course of the disease lasts for more than three months.

My suspicion is pretty high that if you’re reading this blog, it is because “chronic” caught your eye and you more than likely also have a chronic condition. Millions of us do. In fact, at least 1 in 3 of us have at least one. So we know the medical definition. But, what does a chronic condition or illness ACTUALLY mean to you and me?

Let’s go a step farther back. Take a look at chronic in a different context, completely separate from anything related to illness. Many of us can be considered chronic fans of sports, music, art, or gardening for example. Technically anything that we hold a continued interest in is considered chronic. But, instead of calling it that, we refer to it as a hobby.

Our hobbies still require work to improve. We all start as novices and work our way up the ladder. We learn more about them, we work on our techniques, and always try to do better than the last time.

Think of when you were diagnosed with a chronic illness. Initially, there was probably a feeling of not knowing much. It probably was overwhelming. Sometimes it felt like you were being smothered by it. Then there was a learning period about the disease, medications, and management. You probably had to adapt something in your life so that the illness could be controlled easier.

Over time, you got used to the fact that medications, lifestyle modifications and doctor appointments are now a part of your routine. Time continues to march forward and you do too.

Just because an illness is chronic, doesn’t mean that it defines the person that you have always been. You have hobbies, family, friends and goals. All of those are integrated with illnesses. Sometimes we have to pause or slow down because of what our illnesses are doing to our bodies, but you are still YOU.

Don’t let an illness define the person. Instead, you need to define the illness. I have multiple chronic diseases. But, I’m also a chronic pet lover, quilter/sewer, reader and nurse. Chronic has multiple roles in my life.

Sometimes all it takes is changing the way we look at something to make it seem more manageable and not quite so overwhelming. What does chronic mean to you?



‘Cause you had a bad day…


I’m having a pity party for one. We’re all entitled to those every once in a while. We just can’t stay there forever.

Maybe I duped myself by not wearing black today – Friday the 13th. Things go in three always, so I guess I shouldn’t have been surprised when today hasn’t gone anywhere near planned. This morning I spilled water on my shirt; count one. On the way to the hospital for my IVIG infusion, we followed a hearse (empty), but nonetheless enough to make your stomach sink; count two. Then once I got to the hospital, we couldn’t get my port accessed–three nurses, seven attempts; count three through ten.

Yep, that all happened before 11 am. Usually my infusion days last about ten hours, today however, we’re looking at twelve-ish. We didn’t start the medication until 11 after I gave up and asked for a peripheral IV. I also asked for my primary physician to put a referral into the surgeon to see if we can do a little fixing.

I’m also on my third respiratory bug in under a month and a half. So “immune system in a bottle” don’t fail me now. This is what happens when you have a horrible immune system. Every four weeks I come here. Watching the immunoglobulin drip into my depleted body and knowing that it is the reason I have at least some quality of life.

This is a shorter post, one I’m typing while trying not to lose the precious IV in my hand. My pity party for one…

‘Cause you had a bad day
You’re taking one down
You sing a sad song just to turn it around
You say you don’t know
You tell me don’t lie
You work at a smile and you go for a ride
You had a bad day
The camera don’t lie
You’re coming back down and you really don’t mind
You had a bad day
You had a bad day
Bad Day: Daniel Powter

THE INSURANCE SERIES: Part 2 – Understanding your coverage and unlocking good habits

This blog was written by me for part of a series for PatientsLikeMe. I have been given permission to post here. Note that the link to the original post from 9/20/2017 is here.

part2 insurance series

Most of you have probably played the game “telephone” when you were younger. The first person whispers something to the next and it goes down the line of people until the last person says what they were told. 99% of the time, the result was absolutely nothing related to the original statement. Things got misconstrued, wording got changed, and as a result it was totally wrong. Well the same goes for health insurance and healthcare in general. The saying, “If it isn’t documented, it didn’t happen,” is used all the time.

Unlocking good habits

Documentation is the key to healthcare. There are many times when we speak to someone who passes that message along to another person, and your original question has likely been reworded in some form. If you don’t remember anything else from this blog, here is what I want to plant in your head: Document! How many times have you called a doctor’s office or insurance company, had a conversation and then hung up the phone without giving it a second thought? How many times have you taken notes during conversations or written a summary afterwards regarding the content? My guess for many of us would be zero, zip, zilch, nada! You’ve always assumed that the information that was passed along would be correct and that whoever was answering your questions was documenting everything you said.

Start making it a habit of keeping a notebook for your healthcare conversations. That way if there is ever a question of what was discussed, you can refer back to it. If possible, use patient portals if they are available through your doctor or insurance company. Most, if not all of them have messaging features, which is a simple way to ensure things are documented. My practice has always been to attempt to send messages for non-urgent matters. This can also be used for evidence if anything becomes a legal issue.

Knowing your coverage inside and out

No matter what insurance you have, it is essential to know what doctors and facilities are covered. If you have private or employer-based insurance, who is in your network? Are there differences in your in-network vs. out-of-network coverage?

A handy place to find this information is on your insurance company’s website. Most companies have a link that lets you search for doctors and facilities. Your insurance will have your PCP (primary care physician) listed already – make sure that it is correct and update it if there is a change.

Do you remember the pile of paperwork that you received when you got your current insurance? Did you read it? I mean REALLY read it! If you’re like many consumers, you probably skimmed through your Summary of Benefits and were able to see a brief overview of what your deductible, copay, premiums, and out-of-pocket maximum amount were. It also described the difference between coverage for in and out-of-network coverage.

The Certificate of Coverage is going to be your “bible,” if you will. It is the 70+ page document that goes into every detail you ever wanted to know about your coverage. This is a document that I highly recommend you read. If you ever have doubts or questions about anything, this is where the fine print is at. It also will address how to file an appeal or grievance.

Taking a closer look at the types of insurance

Maybe it’s time to look for something more affordable or perhaps you are just coming off someone else’s plan. No matter the circumstances, insurance is something that can be very confusing. Premiums, deductibles, copays, blah, blah, blah. What does it mean? That’s what I can imagine going through your head. Brace yourself for a tidal wave of information.

If you’re wondering what the different types of insurance are, you’re in luck. It’s time for a bare necessities lesson (minus the singing and dancing). Check out this handy one page I wrote that shows the types of public and private insurance available.

Understanding your pharmacy options

Often there will be a Pharmacy Rider, which will list the tiers or classifications of medications for coverage. A rule of thumb is that a generic drug is always less expensive than a brand name. Some patients are unable to tolerate generics or experience a different response than with the brand name, if that’s the case you can ask your provider to file a prior authorization form with your insurance company showing you’ve tried generic alternatives of the drug which have not had the desired effect, and you’ll need to be prescribed the brand name version only. Once again, this information can usually be found in the certificate of coverage or by simply calling customer service.

In addition to your pharmacy coverage, there are many programs available for patients with private or employer-based insurance. Almost all pharmaceutical companies have financial assistance available or will offer copay cards for newer medications. This is the case very frequently for injectable medications.

Also, don’t hesitate to do an internet search. There are a lot of free drug discount cards available. However, many of them cannot be used in conjunction with insurance. That is a detail that you will have to clarify.

I truly hope that this blog has been helpful. There are so many different things that go on within a single policy for one patient that it can be overwhelming. Always ask if there is ever doubt, and DOCUMENT. Don’t play the telephone game!


THE INSURANCE SERIES: Part 1 – Losing Eight Doctors Overnight

This blog was written by me as part of a series for PatientsLikeMe, I have been given permission to post here. Note that the link to the original posting from July 10, 2017 is here.

Kimberly (firefly84) is part of the PatientsLikeMe 2016-2017 Team of Advisors. She’s living with autonomic neuropathy, a rare disease that prematurely ended her career as a registered nurse. In her time as an RN, she was often charged with navigating the ins and outs of insurance companies on behalf of her patients, something she says can be like “trying to find a needle in a haystack.” Kimberly tells the story of how eight of her doctors became out-of-network overnight when her insurance changed, and how she navigated the system to replace those providers and get her care team back on track. Here’s her story…

Last fall we knew that there was a strong possibility that there was going to be a change in our employer based insurance, and that turned out to be true. A decision had been made and we received final word ten days prior to the switch. Along with the letter, there was a form that you could fill out if you had a complex case, or needed assistance setting up care. As a patient who happened to have a very complex case, as well as someone who was going to be utilizing resources galore, this form was what I needed. This piece of paper was my golden ticket. It was filled out almost as soon as the envelope was ripped open. I also attached two more pages with everything detailed, so there was nothing left for the imagination. Medications, treatment dates, specialists, and conditions all were listed, so that they had as much information as possible to start the process.

From in-network to out

We were currently with an HMO Provider in the same town, but our new HMO was not part of the same network. After frantically searching to see if ANY of my providers were going to be able to continue caring for me, I sat in shock.

“Eight of the members of my care team (doctors and physician assistants), were now going to be considered out of network.”

I was feeling a little bit like Cinderella, with a midnight curfew and had to work on setting up a new care team FAST! Luckily, I have an amazing primary care physician (PCP), who was still considered in-network, as well as my local hospital. I knew that I would need referrals to get established with new specialists and my PCP initiated the referral process for multiple specialties. Those took a backseat for the moment, as I had a more immediate need. My monthly infusion for my immunodeficiency was scheduled within a week of our plan change, and I knew that I didn’t even have an immunologist anymore, let alone orders for the infusions! Calling back on a whim one more time to ask for a transitional case manager turned out to be the piece of luck that I needed.

A disconnect in healthcare

The transitional case manager was only responsible for making sure that the first two weeks of my care were set up correctly. Prior to the end of the first two weeks of care, I called and asked to be assigned a complex case manager to move forward with. After speaking to triage, I received a phone call that made me really reflect on the multitude of reasons that led people to enter healthcare. After about five minutes on the phone with a nurse for the case management portion, I was asked two questions:

Her: “Can you get to doctor appointments?

Me: “Yes”, I find rides all the time because I can’t drive more than 10 miles.”

Her: “Do you need help meeting goals?”

Me: “If by goals you mean symptom control, yes, but if it’s checking blood pressures and reporting back to my physician, then no.”

Then came the moment when I almost completely came unglued. The nurse, who was doing her job, calmly said, “You don’t meet the criteria for complex case management.”

My reply was as polite as I could muster at that point, “I just lost eight doctors, so I don’t have any appointments to get to, how about some help with that?”

I was told that it wasn’t part of their job and then the phone line went dead. Sitting back in shock all I could think of, was what if I was sitting at her desk? Perhaps some customer relation training should be part of the continuing education. I got over the incident as quickly as possible and then called back to triage for case management. We discussed what had transpired and then I was assigned a social worker, who has made the entire transition much easier. Neurology was going to be the next hurdle. I was due for a three-month checkup for my autonomic dysfunction and several other procedures.

These were due the beginning of December and I had given ample warning that if we did not stay on the same schedule for procedures, that I would end up in the hospital with a migraine. Let’s just say that my warning became reality. They believe me now.

Rebuilding a care team

We also found out that nobody in-network treats patients with autonomic issues. So, we were given the choice of two facilities to go to. We picked one and literally the beginning of May was when we had our first neuro visit. This was six months later than my previously scheduled one was supposed to occur.

We have been with this insurance provider for eight months now and still aren’t completely settled. Sometimes I have days that it is a full-time job just to return phone calls or update doctors. Plus, I have a case manager with insurance and a social worker within the facility. Remember the form that was mentioned at the beginning? Well, it got lost; good thing I kept a copy. It has been the guide for my care as we have been moving forward. If I didn’t have case management background, I would be lost. I would have given up and my disease would have complete control. I never have given up easily and I don’t intend to now. Every day is a new one, full of opportunity, but this has been by far one of the largest challenges that I have faced in this entire illness.

Kim Call out box



How much a journey changes

If you would have asked me in 2014 where I would be today…

Everyone has goals and dreams for life. We all were asked what we wanted to be when we “grew up.” From a very young age, I knew without any doubt that I was going to be a nurse. My health was poor from the time I was born. When you spend your entire life around the medical community, there are pretty much only two options.

The first: run like hell the other direction and never look back! The second: dedicate your life to what you have already grown up with. I chose the second. When I played with my dolls, I always had a hospital set up. They got shots and IVs. When I got sick, my Cabbage Patch doll also was sick. If Vicks Vapor Rub went on my chest, the doll got it too.

A word to the wise…don’t put Vicks on a Cabbage Patch doll. It doesn’t make the doll feel better; it actually makes everyone around you feel worse because of the stench! Okay, so I learned a lesson; menthol and fabric don’t mix well…but I still was providing compassionate care at the age of four and didn’t even realize it.

I was always sick with respiratory or sinus problems from September to May. Every single year this was the pattern. Needless to say, that equals A LOT of doctor visits. By the time I was in junior high, I was telling the nurses what vein to use for an IV. I was picking up knowledge without having to pay for college credits, although I think college ended up being cheaper than medical bills in the long run.

In high school my mom got diagnosed with Multiple Sclerosis. She had been showing symptoms for a long time and we just needed the “multiple” symptoms to finally get the label. One morning she woke up and couldn’t see out of her left eye. I drove her two hours to the neurologist instead of going to school. At that point I had transitioned to caregiver, aside from the fact that she was my best friend.

Starting nursing school finally was my dream and it happened. I was struggling with migraine headaches along with illness after illness, but I graduated with honors. On my weekends when I went home, I was able to practice my injection skills on my mom, who by then was requiring medications for her MS. There weren’t any oral options available yet.

I had always worked in small, rural hospitals. When I say small, I mean three nurses on a night shift, kind of small. The one area that scared me the most, that I vowed I would never work, was the Emergency Room. It turned out that it was one of my favorite places. Before my life was turned upside down, the areas that were my passion were ER, Intensive Care, and Hospice.

Yes, I realize that those are on completely different ends of the spectrum. But actually they are on very similar ground at the same time. Compassion is needed so much in all three areas. In a week, I could have been with a family who had a son or daughter killed in a car accident, had an 80-year-old father removed from life support, and had a 40-year-old pass away from liver cancer. Each situation was unique, but each required empathy, tenderness, and more compassion than you could imagine.

In 2010, I had a mass in my chest that was removed because we thought it was cancer. That was in February. In August, my mom had gastric bypass surgery. Three days later she had a seizure, aspirated, had a respiratory arrest and ended up on a ventilator. I was by her side so much; I wished I could have curled up in bed with her. In the morning I would walk in and the chart was always open for me to look at her labs, ventilator settings, and new orders from the night. Checking the doses on all of the IV medications was my next step and then finally rounding with the doctors. Sitting down each day with the doctors by myself and looking at images. Discussing situations and knowing that as a Registered Nurse, this was a critically ill patient who was losing the battle. Also knowing as an only child, that my mom wasn’t going to walk away from the hospital.

Each year, I blindly walk this road. From August 26th to September 11. It’s a long, narrow road filled with emotion. I’m typing this while tears run down my face. My best friend, my mom, my patient…I had to do the compassionate thing, I had to let her have dignity in her final moments. Making the decision to withdraw life support is one that nobody should ever have to do, even if you know it is the correct choice. No matter how ready you think you are, nothing prepares you for the finality of it. Nothing brings a parent back…no matter how hard you cry or go through the “what if” game…nothing.

Four years later, my nursing career was stopped in its tracks. A virus triggered autonomic nervous system meltdown. My body began to abandon me and I felt so helpless. I knew how rare this was and even as a nurse, I couldn’t do anything to stop it. At the same time, I finally was diagnosed with a Primary Immunodeficiency. Luckily, we could do something about that. 10-hour long monthly infusions, provide me with my “immune system in a bottle” for four weeks at a time.

Last year, I found my voice again. Although my health is still deteriorating, I have been able to advocate for improved healthcare. My compassion is able to shine through and still make an impact. It takes my mind off of my situation and allows me to make a difference on a much larger scale.

Every three to six months, a new symptom shows up. That means learning how to live all over again. More rare diseases, genetic testing, mitochondrial testing…it’s coming.

At the same time, I become more and more involved in advocacy. This disease may have my body, but it doesn’t have me! Welcome to my new life.